For those who care for someone with Parkinson's disease
[Home] [Forum] [Help] [Search] [Register] [Login] [Donate]
You are not logged in

Topic Advice Please Go to previous topic Go to next topic Go to higher level

By dear On 2011.09.19 19:19 [Edit]
This is a new forum for me and I need advice, please. My husband has had Parkinson’s for 22 years now, and does relatively well. What concerns me is a breakdown in cognition and frequent falls over the past 6 months, and how to effectively cope and manage the challenges. I love my husband and am devoted to him and our relationship. Living with my husband has become overwhelming. I need a place where I can talk and need help resolving the stress this is causing. He attends the local support group meetings so that doesn't seem a good option for my needs. I'm sorry if this seems like I'm unloading.

His forgetfulness and inability to listen or remember what is said, means multiple repeated discussions. Though we reach a mutually beneficial conclusion, he often forgets this, initiates a new discussion, reverses his decision or claims he never reached one, resulting in a cyclical pattern of discussions, and finally conflict. He won’t or can’t (I’m not always sure of which) do the work but he wants to make the decision even if it means losing money, having substandard work done that now is being ripped out and redone because of the water leaks that caused black mold throughout the shower area and bathroom walls. In his mind, he is saving money and everything is great.

He picks what people say apart, says he doesn't trust anyone, and won't believe it unless he works it out himself or gets information from others himself. That's fine but when he does, he concludes others are "wrong", "stupid", "don't know what they are talking about". This is about professionals, his friends, his mother and me. The conflict and stress drives me to tears and I now lose my temper. While I know he can't help much of this, I'm sick of this.

He is distracted by just about anything around him, compelled to multi-task while eating, conversing, and driving, so he constantly chokes, interrupts, swerves and speeds down the road. He seems incapable of singularly tasking and insists he's safe because he thinks he can compensate by concentrating. He agrees with the professionals when in their office but when he leaves there he "does what he feels like doing" as he puts it, and doesn't "sweat the small stuff". He's more child like all the time.
Regarding falls, they happen most at the end of the day, particularly when he drinks several times a week, or smokes Marijuana. He can’t carry anything in his hand and turn to move, or multi-task while walking. He's getting the idea that if he is going to drink, he needs to use his scooter so he is seated to prevent falls.

Lack of sleep for me is another issue. He gets wound up at night and wants to stay up until the early morning hours, clunking around, talking and singing to himself, dropping things, and awakening me when he comes into the bedroom, squirming and bouncing up and down on the edge of the bed as he undresses, tiddling his toes around and around in bed until he falls asleep. I started sleeping in the back bedroom a couple or three nights a week because I need more than 5 or 6 hours per night. Despite many discussions about the bedroom being a "quiet zone", and gaining agreement, he turns on the radio, and blasts the iPod. I can hear every word, and can't imagine what this must be doing to his hearing. He says he does these things because he doesn't think these things should bother my sleep, or states when I try to sleep late once in three weeks to catch up, that it is 9:30 am (implying it's okay). Normally I'm awake between 6:30 and 7:30 am, and I fall asleep comfortably about 10:30 pm to be fully rested. Though he is in bed 10 hours a day and requires more sleep than I do, he doesn't think I need any catch-up sleep, and plays the radio when he is ready to lie awake in bed for the next few hours upon waking. Rational discussions work less and to resolve differences. I feel like I need to get away from him to have the peace I need.

He accuses others of misrepresenting information, being "stupid", and "manipulative", and says nobody can be trusted. He says he never trusted adults as a child or other people as an adult, so this isn't Parkinson's, I don't think. When I've finally had enough and take the matter into my own hands (like dealing with the contractors that began complaining about his nitpicking) he accuses me of being controlling. Things are very black and white, right or wrong with him. I've recently taken the role of managing the household finances and make sure I am part of any discussions with the contractors because I don't want the consequences of his sole decision-making, given a track record over the past year or so. He can't remember his passwords to his accounts and accuses me of changing them. He frequently can’t find things.

He can appear rational and like he's attentive, when he isn’t. He doesn't make much eye contact so you can't see from his pupils if he is registering what is being said or not. He Parkinson’s mask erases the other cues one uses to decode communication. He's otherwise nice with others most of the time, minus the sarcasm and accusations. I become the target of his jibs and jabs at home or in public. He forgets he says these things. Discussing this just escalates into an argument so I am wasting my energy. This is destructive to our relationship and is wearing me down, along with my health. The situation is distracting me from my ability to effectively work and accomplish my projects, because these other issues take so much time and create so much stress.

He seems addicted to his computer and sugar (about 1 1/lb. a month on cereals, plus chocolates, candy and corn chips), which comprises about half of his daily diet. He sits at his computer nearly every waking hour. I prepare a balanced diet but he chooses the other, so I've let it go. He goes through buying phases (13 guitars in a matter of a few months. He used to play them.)

We are sectioning off our home to create separate living quarters to bring in a personal assistant, or to at least pay for a personal assistant if we rent this area out. I believe for the long-term, this will enable us to have the help needed with less money out of pocket. Currently, I have a housekeeper that does the heavy cleaning but we need someone to come in a few times a week to pick up after him, clean his urinal, do laundry, etc. I really think it was a lot less stressful working away from home and coming home to the mess than dealing with this all day long, day after day.

My own professional work, the construction, and the added time and stress involved in working with and around his abilities and deficits are overwhelming. I made a commitment "for better or for worse" and I am a person who keeps commitments. My faith in God reassures me. Would counseling help us? Would couples counseling help with the deficits he's demonstrating or is this matter of me learning how to manage around the challenges, therefore I should go to counseling? Do we need separate lives or living spaces?

Thank you for listening.

By karolinakitty On 2011.09.19 21:33
You don't mention what drugs he is on, but they may need an adjustment. Also it sounds like he may be heading into PD dementia.. I know you say his personality has always been a "nit picky" and trusts no one, but part of the dementia can be those issues...has he been diagnosed with the dementia? If not can you talk to his doc about it....I can tell you if he has dementia, counseling for the both of you would be out...he wouldn't trust the therapist nor would he even remember half of what they say....

I can't help you in the lines of separate lives or separate living spaces as I am biased in that area and refuse to ever let that happen.....and I've dealt with some pretty hefty dreams from my guy so i am not looking through rose colored glasses.

My biggest thing would be to try to talk to the doc away from him and let the doc know what is up....

By lurkingforacure On 2011.09.19 23:36
Welcome to the forum, this is a great place for PD caregivers. You do need to make sure the meds are working for him, yes. But to me, you sound like someone who after 22 years of dealing with PD is just plain worn and getting more worn.

I dont' have answers for you really, as we are relatively new on this journey (almost 6 years) and have kids on top of that. Most days I feel like I am pretty much raising them on my own even though daddy lives in the same house. He just does not have the energy to keep up with them at all and has a lot of pain, plus the other lovely PD symptoms that zap him from being the daddy he would otherwise be.

I guess I'm really responding because so much of what you wrote I and many others can relate to here. I gave up sleeping in the same bed almost a year ago, my husband gets up five or six times a night to eat or get on the computer or once I found him looking through binoculars at the moon!, and always seems to wake me up and I cannot get back to sleep easily, especially when he's crunching yet another snack twenty feet away or I can hear whatever youtube video he's watching on the internet. It's not easy, as if I don't sleep in our bed I have to sleep on one of our kid's botton bunk bed and it's not exactly what I would call comfortable for an adult to sleep on, but it beats being woken up all night long. I've tried to sleep in our bed off and on, but he really is up so much it's impossible. One night of that and I'm not a very nice person the next day, two sleepness nights in a row and it's scary. My guy often goes back to bed around 5 or 6am and really get snoozing, but I can't because I have to get up and make the kids' breakfasts and lunches and then get them dressed and off to school and then get everything done for the day before it's time to get the kids home, get them to their activities, etc., etc., etc.

It seems to be a very common problem with PWP, they can get to sleep usually pretty easily, but cannot stay asleep for more than a few hours. My husband will wake up, and cannot get back to sleep, so he looks for things to do because he is bored....unfortunately, he never seems to find things like take the trash out, pick up the kids' toys, clean the cat box, fold the laundry, you get the idea.

I know a lot of spouses sleep in separate rooms for this very reason. You cannot help take care of someone, much less manage a household and family, if you are living on a sleep-deprived edge yourself. Some people use baby monitors so that if their loved one needs them or falls or something during the night, they will hear them. You may want to consider using one of those although personally I don't really see the difference between sleeping in another room with a monitor that will communicate all the sounds of the bedroom or actually sleeping in that bedroom: either way, you're going to be woken up by all the noise.

I know about the questions, and yes, they can drive you nuts. My guy doesn't forget things, but he will ask me questions that make me do something in order to answer when he is right there and could answer it much easier himself. For example, he'll ask me what time it is, when I am nowhere near a clock, but his phone with a clock right there on its face is on the table next to him. Sometimes I wonder if he does this just to have something to say, or maybe he doesn't realize that asking me where the peanuts are when I have my hands full of dirty dishes in the sink and he is standing right by the pantry is annoying. I just try to take a deep breath and remember how hard it must be to be the patient with PD. And I've learned to keep my mouth shut more often, I have a temper and it's usually a bad idea for me to say anything when I'm tired, annoyed, angry, or sick of dealing and living with PD in the house. That's hard, because I feel better when I spout off, but usually regret what I say.

I also try to think of stressful things as temporary whenever I can. Like right now you are in construction, which is awful under normal circumstances. But one day, hopefully soon, the construction in your home will be done, and that stress will be gone. If you can keep that in mind, it may help you navigate through this construction phase more easily.

You may find that it helps you to vent here, and we all understand. We may not have the answer you need or are looking for, but we hear you and understand where you are coming from. You can search prior posts as well, and may find something helpful. I hope that you feel a bit better having posted and that you find support here.

By LOHENGR1N On 2011.09.20 00:22
dear, I don't know most of the answers to the questions posed, however like your husband I seemingly get "wound up" at night too. I drag throughout the day napping occasionally at the most inopportune times myself. (lol, nothing bursts an ego like falling asleep listening to someone talking to you.) But have you tried anything to lift the sheets and blanket by your husbands feet? A lot of times we Parkinson's patients have trouble with the constriction of our feet. You mentioned his "tiddling his toes around until he falls asleep". Some people use a box or rolled up blanket to lift the bedding maybe a tube of cardboard like linoleum used to come in? It's worth a try and after years He might not realize this is what is uncomfortable to him or he might not express it right. Sometimes over the years of living with Our disease both We patients and caregivers/partners might kind of "glaze over" the problem or not see it clearly and it can grow into a Their picky/Their just being irritating situation when it has a real cause and can have an easy fix? Welcome to the forum you found a great place with great people here who will take time out of their busy lives to help any way they can. It's always good to have a few extra eyes on a problem to help see it in different ways. Keep posting. Take care, best of luck and hang in there.

By parkinit On 2011.09.20 03:35
Dear, you could be talking about my spouse. I will say that drinking enhances the effects of pills, so mist pwpd have to avoid drinking. I have no idea how throwing mj into the mix would affect his other drugs.

I have someone here at night and sleep in a separate bedroom most nights so I can function during the day. Pd does hinder the ability to multiple-task. Pd does make pwp more self-focused. Part of the disease may cause bouts of psychosis, delusions, and paranoia. I agree that the drugs must be evaluated, and if bad enough, a drug holiday may be necessary. Hang in there, you are not alone. We hear you.

By susger8 On 2011.09.20 08:11
Dear, please do not feel that unburdening yourself is a negative thing -- this is exactly the place to do that. People here have been in your position and know exactly what you are facing. You can find wonderful support and advice in this community.

The behaviors you describe are common in many people with PD, unfortunately. PWPs will agree to safe behaviors but then forget. They can't help it. It's impossible to prevent 100% of falls or keep someone from doing non-productive activities. We all just do as much as we can.

You mentioned some behaviors that sound compulsive, like shopping and using the computer. You should know that the dopamine agonists Mirapex and Requip are often associated with compulsive behaviors. People spend thousands of dollars shopping, or get into porn or gambling. It's good that you have taken over the finances -- keep an eagle eye on your bank accounts and credit card balances, if your husband still has access. Sometimes PWPs have compulsive behaviors anyway, and sometimes it seems related to other meds, but if your husband is on Requip or Mirapex, you might discuss this with his neurologist. For some reason, much of the medical community seems unaware of this side effect.

It goes without saying -- watch out for his driving. PWPs typically have trouble with spatial relationships, and that is essential for safe driving. Even if he agrees to conditions on his driving, like avoiding the highway, or not driving at night, he may forget what he agrees to.

Paranoia can be related to the meds also, and it is very heartbreaking when it's directed towards loved ones. Sometimes adjusting the meds helps, but sometimes not.

Best of luck, and please feel free to ask anything you need to.


By dear On 2011.09.22 00:17 [Edit]
Thank you all for your comments and insight. It moves me to tears to now know there are others who understand and can make some kind of sense out of this. This helps me and I appreciate your time in posting your experiences. I will continue to read the information posted so I can learn what I need to understand to make this better. One post suggested the couple always says please and thank you to one another. Though my husbands says this is too sentimental, we agreed to try it. Will he remember to do this? Possibly not, but it's worth a try.

My husband has better days and then not-so-good days, and breaks away are refreshing, as is prayer. It scares me that this will continue to progress past the current level of challenges and it is good to finally have found a community where I can ask questions and bounce matters off others more experienced with this journey.

My husband seems to resent my abilities. As a business woman, I cannot any longer let these financial matters slide. Sadly, he doesn't understand, or accept this, or realize that someone needs to protect us. Where does one draw the line on quietly taking care of business, and in consulting one's mate to gain concensus before taking action, with the problems we are experiencing?

If I could afford it, I'd hire someone to handle the finances but this is unrealistic. He has his own investments from prior to our marriage, and I don't want to be involved with this because of the conflict our common areas is already causing. I am encouraging him to work with his friend so he can watch over my husband's shoulder and protect or guide him. It's enough for me just with the house and our common life and matters together.

Thanks again for your time and consideration. You've given me much to think about and to try.

By dear On 2011.10.13 22:22 [Edit]
After traveling and sleeping in separate hotel beds, I really think putting twin beds in our bedroom might be a good idea. I slept better without the movement next to me at night. We want to sleep together so this would be a reasonable first step, I think, towards staying together yet I could get better sleep.

The ear phones and iPod are helping to create a sanctuary inside the house when we are together. Since it's Fall, I am making use of the great out-of-doors. It's quiet and peaceful.

By poppadum On 2011.11.01 20:45
Dear, You have described the greater part of our lives. That which is not part of it yet, certainly describes our future.
We have lived with pd for the past 10 or so years but the last 2 years have been extremely demanding. Some days I am at my wits' end but so far there is no alternative than to battle on. My own health is not too brilliant either. I am a heart patient (so is hubby but to a much greater extent), I have multiple migraine attacks per week (leftover from an accident), I have 3 spinal hernias and Ménière's disease but I can still just about manage to keep the household going.
With some help from a cleaner and meals on wheels I look after my mother who is 92. Thankfully she has overcome cancer 3 times and is in better health than hubby and me.
Son N° 2 and daughter-in-law have 4 children, the latest is 5 weeks old. They live nearby but we are only allowed to see them a couple of times per year and only at my mother's. None of the grandchildren have ever been to our house. Until recently the eldest granddaughter thought I lived with my mother. Son N° 1 who is 40 and whose spine has had to be fixed rigid due to a 58° scoliosis, has finally got a girlfriend. They have been together for 2 years. In spite of the 17 year age gap they seem a very good match. Unbelievable but true, her parents who are good friends of ours, don't object, probably because they have known our son for a fairly long time and they always got along very well. Son N°1 had fancied his girlfriend for more than 2 years prior to their getting together. He thought it would be unfair to both her and her parents if he asked her out. It turned out that she had fancied him from the day she set eyes on him. He is a computer freak and used to fix her father's computer. All of a sudden her computer started having problems or broke down at the drop of a hat.
Why did I recount the latter situation? Probably to show myself that however bad things can get, something good happens to balance it out. Seeing it that way is the only way I can keep going because in spite of using all the medicinal and other help I can get I can assure you, lately I have quite frequently had evenings when I went to bed hoping to wake up dead.

© · Published by jAess Media · Privacy Policy & Terms of Use
Sponsorship Assistance for this website and Forum has been provided by
by people like you